Desperate American AIDS Victims Journey to Paris, Hoping That a New Drug Can Stave Off Death
08/12/1985 at 01:00 AM EDT
Bob White stands by Notre Dame in Paris as a photographer snaps the picture at right. An American tourist approaches and asks, "Are you famous?" Says White, 31, a health-care planner from San Francisco, "No. Rock Hudson is famous. I'm just sick."
The two men share the same hideous disease: AIDS has killed half of the nearly 12,000 Americans it has stricken, and threatens the lives of the others plus the several thousand who will develop the disease this year. Both Hudson and White came to Paris, where there is a treatment that offers, if not a cure, at least a glimmer of hope. But Hudson is famous, and some AIDS victims anticipate that this will become a backhanded blessing, finally focusing front-page, prime-time attention on their disease, finally bringing in additional research money for the mortal war they are waging.
Hudson's case has spotlighted the research at Paris' Pasteur Institute, where 70 to 100 desperate Americans have been treated through its affiliated programs in the past year. They have come besieging doctors for injections of HPA-23, a promising antiviral drug not yet available in the U.S. "Something is wrong with the health-care system," says Ron Najman, media director of the National Gay Task Force, "when a wealthy man and a friend of the President has to go to Europe for treatment."
Bob White heard about HPA-23 on a public television show a month before his case of pneumonia was diagnosed as AIDS. "It's like the day you get your death sentence," he says of the meeting with his doctor. "I considered suicide but said, 'No, you must fight this; don't give up.' " After pleading with a French doctor, he was admitted to an experimental program for AIDS sufferers and began receiving HPA-23 shots five days a week for an indefinite period, free of charge from the French government. He feels an improvement—he's swimming 1,000 meters a day—and he thinks that HPA-23 is doing its job, inhibiting the enzyme that the AIDS virus needs to multiply. There can be side effects—fatigue, blood-clotting disturbances and liver problems. And after patients stop taking the drug, the virus can reappear. Still, HPA-23 does seem to inhibit the growth of the virus.
What HPA-23 does not do is repair the AIDS-damaged immune system. Patients are thus still vulnerable to many potentially fatal diseases. HPA-23 "does not significantly improve the functioning of the immune system," explains White. "Rather, it stops further destruction of it." Once—and if—the AIDS virus has been choked off by HPA-23, the immune system may then need to be stimulated by other medication. And at the same time, the so-called opportunistic diseases AIDS invites have to be treated.
"There is no proof that HPA-23 is the best antiviral product, nor that it is sufficient," says Dr. Willy Rozenbaum, one of the first French specialists to use the drug on AIDS patients. Says another French physician: "There are no guarantees. And we are not claiming to have found a cure.... We are not saving their lives. We are trying to prolong them." But that attempt has been enough to draw Americans to the doors of the institute. "How can America tell me I can't have the drug," asks Bob Herman, 29, an architectural lighting designer from New York, "when I'm sitting here dying?" He received the injections in April and now awaits the results of complex tests to assess his condition.
HPA-23 is unavailable in the U.S. because the French manufacturer of the drug has been assembling clinical results to present to the FDA. If the FDA approves the application, the company spokesman says, then the drug could be available for limited human testing in the U.S. next month. But Rozenbaum says that "other experimental drugs in the U.S. can be used to the same effect." They include suramin and a handful of other antiviral medications. The clearest difference between these drugs and HPA-23 may be the latter's head start in clinical use. "There are other drugs, but no money to test them," says Dr. Mathilde Krim, co-founder of the AIDS Medical Foundation. "People are dying, and the drugs are available, but the federal government doesn't make the money available to test them." One doctor speculates that a cure could be 10 years off—but believes that so disastrous a delay could be halved if enough money and brainpower were applied to the attack on AIDS. Under increasing public pressure, the Reagan Administration last week went to Congress and increased its request for funds to combat AIDS in fiscal 1986 from $85.6 million to $126.3 million.
While Rock Hudson's fame has drawn attention to the AIDS epidemic, there is an accompanying danger of scandal and trivialization. As Larry Kramer—the author of an angry play about AIDS, The Normal Heart—says: "A poor, beloved American is lying dying in a hospital and all our media can worry about is whether Linda Evans is going to get the disease." That question last week was asked by some reporters: Is Evans at risk because she kissed Hudson on Dynasty? AIDS specialist Dr. Joseph Sonnabend echoes a consensus of experts surveyed: "To date, there is no incidence of AIDS being spread by kissing—there has never been a documented instance."
Kramer fears that AIDS "will be headline news for a couple of days...then everyone will forget." Fellow playwright Harvey Fierstein adds: "I would like to tell America and the world that if anyone has ever been moved by Rock Hudson, if they have been given any pleasure [watching him on TV or in films], if they could send $1 to AIDS research and support groups, we could do a lot. Maybe not for him, but for those 17-, 18-and 19-year-old boys who won't have a chance to be Rock Hudson."